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Primary lateral sclerosis (PLS)

Primary lateral sclerosis (PLS) causes weakness in your voluntary muscles, such as those you use to control your legs, arms and tongue. Primary lateral sclerosis is a type of motor neuron disease that causes muscle nerve cells to slowly break down, causing weakness.

Primary lateral sclerosis can happen at any age, but it usually occurs between ages 40 and 60. A subtype of primary lateral sclerosis, known as juvenile primary lateral sclerosis, begins in early childhood and is caused by an abnormal gene passed from parents to children.

Primary lateral sclerosis is often mistaken for another, more common motor neuron disease called amyotrophic lateral sclerosis (ALS). However, primary lateral sclerosis progresses more slowly than ALS, and in most cases isn't fatal.

Symptoms
Causes
Complications

Signs and symptoms of primary lateral sclerosis (PLS) usually take years to progress. They include:

Stiffness, weakness and spasticity in your legs

Tripping, difficulty with balance and clumsiness as the leg muscles weaken

Related

There is no single test that confirms a diagnosis of primary lateral sclerosis (PLS). In fact, because the disease can mimic signs and symptoms of other neurological diseases such as multiple sclerosis and ALS, your doctor may order several tests to rule out other diseases.

After taking a careful record of your medical history and family history and performing a neurological examination, your doctor may order the following tests:

Blood work. You'll have blood tests to check for infections or other possible causes of muscle weakness.

Magnetic resonance imaging (MRI). An MRI or other imaging tests of your brain or spine may reveal signs of nerve cell degeneration.

Your doctor also may order an MRI to look for other causes of your symptoms, such as structural abnormalities, multiple sclerosis or spinal cord tumors.

Electromyogram (EMG). During an EMG, your doctor inserts a needle electrode through your skin into various muscles. The test evaluates the electrical activity of your muscles when they contract and when they're at rest.

This test can measure the involvement of lower motor neurons, which can help to differentiate between PLS and ALS.

Nerve conduction studies. These tests use a low amount of electrical current to test and measure your nerves' ability to send impulses to muscles in different areas of your body. This test can determine if you have nerve damage.

Evoked potentials. Electrodes, which are attached to your scalp and several other areas of your body, measure and record your brain's response to touch or muscle stimulation. These tests may help evaluate nerve damage or degenerative nerve conditions.

Spinal tap (lumbar puncture). In this procedure, your doctor uses a thin, hollow needle to remove small samples of the cerebrospinal — surrounding the brain and spinal cord — fluid from within your spinal canal for laboratory analysis. A spinal tap can help rule out multiple sclerosis, infections and other conditions.

Positron emission tomography (PET). A PET scan may reveal degenerative changes in the brain and help diagnose PLS.

After other diseases are ruled out, your doctor may make a preliminary diagnosis of PLS.

Sometimes doctors wait three to four years before giving a diagnosis, because early amyotrophic lateral sclerosis (ALS) can look just like PLS until additional symptoms surface a few years later. You may be asked to return for repeat electromyography testing over three to four years before the PLS diagnosis is confirmed.

If you experience depression, your doctor may prescribe antidepressants. Amitriptyline and other drugs also can help drooling problems.

Physical therapy. Stretching and strengthening exercises may help to maintain muscle strength, flexibility and range of motion, and to prevent joint immobility. Heating pads can help relieve your symptoms of muscle pain.

Speech therapy. If your facial muscles are affected by PLS, speech therapy can help you compensate for speech and facial muscle problems.

Assistive devices. You may be evaluated periodically by physical or occupational therapists to determine whether you need assistive devices, such as a cane, walker or wheelchair, as PLS progresses.

Periods of feeling down about having primary lateral sclerosis are expected and normal. Dealing with the reality of an incurable, progressive disease can be challenging. To cope with the disease and its effects, consider these tips:

Seek emotional support. Family and friends can be great sources of comfort and support when you're wrestling with the emotional aspects of long-term disease.

Because primary lateral sclerosis is an uncommon diagnosis, it might be a challenge to find a local support group for people with your condition. However, some online discussion groups are available, and it may be helpful to see how others have coped with the disease.

Get professional help if you need it. When faced with a chronic illness, it's not unusual to become overwhelmed at times. Seek out professional counseling for another perspective, or if you're struggling with depression and need advice on treatment.

Know and use resources available to you. If you reach a point where your disease is restricting your activities significantly, ask your doctor about devices designed to help you stay independent.

In addition, there are social services available to people with disabilities of all kinds. Try to learn all you can about the resources available to you. Sometimes relying on your community for help can strengthen ties in new ways.